When your migraine is being compared to North Korea, then you know you’ve got problems. That was my thought last month as I listened to University of Vermont neurologist Dr. Robert Shapiro share some of his recent findings on government migraine research funding.
He made this comparison in a training session with nearly 50 lobbyists (mostly headache specialists, plus some writers like me mixed in) who participated the next day in “Headache on the Hill,” which I talked about in my last post. “Headache” is the lobbying effort to encourage Congress to correct extreme imbalances in federal research on migraine, which causes the U.S. at least $31 billion in total economic cost.
In Dr. Shapiro’s analogy, the state of migraine funding equals North Korea, while epilepsy is represented by South Korea. And that makes sense. Back in the 1970s, both diseases received comparable funding, but then epilepsy advocacy advanced while such efforts for migraine never materialized.
Thirty years later, the results of these divergent paths are evident: Aerial surveillance photographs reveal a thriving, lit-up South Korea, and a North Korea shrouded in bleak darkness. Similarly, epilepsy–which causes much less overall burden and disability than migraine–now receives about 30 times more funding, by Shapiro’s estimates for 2009.
In his studies, he compares migraine funding to that of many other diseases, but epilepsy is particularly illustrative because of how much it has in common with migraine, including similar neurology. Those who suffer from either ailment take similar drugs, and are more likely than others in the population to have both problems at once.
The difference in treatment progress can be seen in the fact that, as Shapiro points out, “there has been virtually no innovation in migraine research” since 1992. Since that time, five new major drugs were developed for epilepsy, compared to only one, Imitrex, for migraine. (The six other Imitrex-like “me too” drugs for migraine don’t count.) Shapiro specifically credits the federal drug-screening program for pharmaceutical advances with epilepsy, saying that a parallel program for migraine “would be the single-most important thing we could do to accelerate new drug development.” Federal funding also influences medical schools, which now train relatively few headache specialists despite headache being the number-one reason for visiting a neurologist.
In making comparisons to such illnesses as epilepsy, Shapiro repeatedly stresses that his aim is not to deny well-deserved funding for them; he would just like to see migraine more proportionately funded according to its proven impact on disability. His original data provides an invaluable basis for comparison, which we never before had in such concrete terms. While the NIH does not publish specific figures on federal migraine research funding, Shapiro and colleague Dr. Todd J. Schwedt arrived at an estimate of between $6.8 and $13 million a year. They believe that amount is at least one-tenth of what is needed.
But deep-set biases remain against considering migraine a serious disability, despite ample research to the contrary. As Shapiro and another colleague explain in an editorial for the journal Cephalalgia, disabling migraine is still confused with the common and milder tension headache. Also, many doctors have been locked in a 100-year-old mindset that migraine, as an “invisible” disease primarily associated with women, is mainly the result of neurosis, not neurobiology.
To counter this bias and get migraine its fair share of funding, Shapiro hopes to mobilize migraine sufferers on a grassroots level. They and their allies can start by signing up on the website of the Alliance for Headache Disorders Advocacy, which will alert followers to future strategic political campaigns. If even a fraction of the estimated 60 million likely migraine sufferers mobilize, he suggests, we will account for a major force–one difficult to continue to ignore.
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